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Have all the symptoms of Hypo but TSH normal
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Have all the symptoms of Hypo but TSH normal

I'm 22 and male but my symptoms for the past 6 years fit with hypothyroidism. However every time I get my TSH tested, the doctor tells me its normal (last one was 1.9). I've read online that TSH is not conclusive for a diagnosis and you can still be hypo with a "normal" TSH...but my doctor told me that even if I want to test for Free T3 and T4 and antibodies, the lab won't run those tests if the TSH is normal. She also told me that if the TSH is normal there is no chance that I'm sick. Is she right?

thank you for any advice you can give.
23 Comments Post a Comment
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Avatar_f_tn
I have hypothyroid (low T3 and T4) and my TSH is at the lowish end of normal.
This is the typical profile of hypothyroid people with Lyme disease, which I have. I don't know if any other diseases that can give you this profile, but what I can tell you is that the sypmtoms of hypothyroid have about a 90 percent overlap with Lyme disease symptoms.

Over 50 of people with confirmed lyme disease never get a rash and swear they have never been bitten by a tick. To test for Lyme you need to get a Western Blot (Not ELISA, it is nearly always negative if you have been infected for more than 6 weeks) and demand a printout of all the bands to see for yourself what came up positive. (I know 2 people who were told they were negative because their doctor didn't know which bands are lyme specific).

What the doctor told you about the lab refusing to run T3 and T4 tests if the TSH is normal was outrageous BS. The lab will run any test they are paid to run! If the doc doesn't want to test you further I think you should find a new doctor.

If you want to give me more detail on your symptoms I can give you extra comments in relation to how lyme-likely they sound and how to find a doctor who knows about lyme disease..
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649848_tn?1357751184
Your doctor is very incorrect in saying that if TSH is normal, you aren't sick.  TSH should never be used, alone, to diagnose and/or treat a thyroid condition. It depends on the levels of FT3 and FT4.

If I'm not mistaken, BC would be under Canada's National Health Care System.  It's possible that NHS guidelines prohibit labs from running FT3 and FT4 and/or antibodies, unless TSH is abnormal, even with a doctor's orders. This is because of the belief that anyone who is hypothyroid will have a high TSH. We see this with patients in U.K, but I've never run across it in Canada.

If this isn't a guideline of your health care system, then your doctor is simply feeding you a line of bull and you might want to find a different doctor.
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Avatar_m_tn
Yeah I asked the nurse when I was taking another test a few days ago and that's exactly what she said about labs being prohibited from running the tests.
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Avatar_m_tn
Yes absolutely. Here are my main symptoms:

- dry hair, falling out a little bit daily
- dry skin, especially on the face
- dark circles under eyes and tired lines
- post-nasal drip in the morning
- nasal congestion
- fatigue
- low energy
- sleep for 8-12 hours, still tired
- bad memory, hard to concentrate
- constipation or diarrhea
- abdominal pain, usually in the morning
- gas
- heartburn (new symptom)
- cold hands and feet frequently, regardless of weather
- feeling really cold sometimes
- can't eat in the morning
- symptoms get better in evening

Thank you :)
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Avatar_f_tn
Hi Gleb,
These symptoms all fit with Lyme disease, but they also fit perfectly inside the subset of Lyme symptoms that correspond with hypothyroid symptoms.

What is your alcohol tolerance? One of the major suspicious factors for lyme disease is that suddenly you cannot handle alcohol like you used to.
Another Lyme indicator is that your brain fog and lack of concentration may include a few very freaky elements, which could include any one of these: You randomly forget a word or say totally the wrong word in a sentence; You suddenly cannot find your way to places that you used to know fine; you cannot recognise some people's faces when you ought to know them perfectly well; You suddenly forget completely what you were talking about when you are in full flow. There are many other examples.
With lyme you also sometimes get funny neurological things, such as often get pins and needles, or your physical coordination deteriorates so you drop things or trip over more often.
Many of these are things you would not immediately consider illness symptoms or might just blame on being tired.

The fact you feel better in the evening makes me wonder if you have low cortisol levels, which could be due to Addisons disease or just adrenal insufficiency. Adrenal insufficiency often goes along with hypothyroid, but you can have it with a normal thyroid.
Many people with Addisons disease feel nauseous a lot and some have frequent vomiting, others get darkening of the skin that looks like suntan, either in patches or generally all over.

The mucus and postnasal drip also makes me wonder about chalmydia pneumonia. It's another of the insidious chronic infection that causes constant exhaustion and other symptoms, particularly in the nasal membranes and digestive system. Although it is called pneumonia you nevr get more than a mild cough adn that soon clears up - in teh chronic phase the infecitons usually gives you nasal irritation and sinusitis and spreads all over the body. It steals ATP from the cells which means you cannot use oxygen properly for making energy.

I'd suggest having a read up on these illnesses to see if they sound plausible to you and worth asking your doctor to test for.

If you want good links on any of them let me know and I will dig some out.
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649848_tn?1357751184
I don't know how the Canadian health system works, but I know in UK, there are ways to get around the NHS.  Some people have had to go through special procedures to get the FT3/FT4 testing; others have had to go private. I think you have the option of going private, don't you?

You might also ask your doctor to test the thyroid antibodies to determine if you have Hashimoto's.  A diagnosis of Hashi, might be enough to get you the FT3/FT4 tests.

You might also consider a different doctor, as I've heard others in Canada say they've never been denied testing, so I don't know if that depends on the doctor, insurance or what....... you should do some research on that and find out requirements.
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Avatar_f_tn
Gleb, where do you live?
If it's the UK, I can tell you every trick in the book to get what you want from the NHS!
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649848_tn?1357751184
Gleb is not in UK...... He's in British Columbia, Canada.  They have a system similar to that in UK.  You might be able to give him some ideas to try.
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Avatar_m_tn
Thank you guys so much. I am indeed in BC and I did ask my doctor about the antibody tests along with the free t3 and t4, I just didn't mention it.

As I am waiting to get an appointment with an endocrinologist, I was thinking I would see if he would test me some other way or tell me how I can get those tests done.

The situation in Canada towards private health care seems to be that it does exist but is constantly regulated and watched by the government. I tried to find private lab companies but so far nothing.

Youvegottobekidding, you're very thorough! Thanks for all the suggestions. I did actually look a lot at Lyme disease in the past but I didn't have all the symptoms and also it seem to be quite rare.

A quick google search says that it is usually tested by looking at IgM and IgG antibodies in the blood, and if I remember correctly I had something like this tested in one of my many blood tests. Either way I will ask my doctor what she thinks.

I don't have any problems with nausea or vomiting, and I had my cortisol tested in typical blood tests multiple times.

The mucus I get in the morning is really confusing to me. It's usually a mix of white and yellow mucus. I did reduce the PND, mucus, and nasal congestion a lot by taking Nasonex (nasal spray usually taken for allergies), but I still usually cough up some clear/yellow mucus in the morning. Now that I think about it, I did sometimes get weird coughs, "dry" chest pain and some other lung-related symtpoms, I just didn't think anything of them. I think I can easily test this with an x-ray?

Thank you very much. I'm definitely going to look into these with my doctor and look more online. You guys are really helpful!

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Avatar_f_tn
Hi Gleb,
Yes, too thorough....!!! I had Lyme disease for 28 years before figuring out what it was... so at 6 years of your mystery illness you are a mere novice! 28 years gives you time to do a LOT of medical research.  :-)

"Lyme disease is quite rare" is what doctors used to think.It's now spreading 4 times faster than AIDS globally. In some areas - there are terrible hotspots in Canada - the spread is much faster than this.
Here's an article a bit close to home for you about how the true figures are being covered up in Canada:
http://www.richmond-news.com/health/Disease+expert+excuse+hogwash/3818736/story.html

Nobody with lyme disease has all the symptoms, it wanders about people's bodies and picks on organs randomly. One person with lyme can have literally no overlap with another lymie - except the only thing that we all have is the tiredness. I think that's the main reason non-specialised doctors are so poor at recognising it.
Have you seen the Canadian lyme website?
It has a symptoms questionnaire which I think is very good:
http://www.canlyme.com/patsymptoms.html

The average lab produces a false negative for lyme disease over 50 perent of the time, adn even when they present positive bands, most doctors - definitely most canadian ones - will deny that it is positive unless about eight bands come up positive, which nobody gets!
If you do want to get tested again, you would need to send your blood to one of 2 labs in America - one is in New Jersey and actually looks for live bacteria in the blood, the other is Igenex which has the most sensitive antibody test. Of course you'd be paying privately for this and would have to arrange it directly with the lab.
Have a look at this site which has diagnostic and other info:
http://www.ilads.org/

Meanwhile for Chlamydia pneumonia, which is beginning to sound very possible, you would need a blood test and a nasal or sputum swab. In the mucus, the white is caused by your own dead white blood cells fighting infection and the yellow is bacteria. So there's definitely something in there. Unfortunately this is another infection with an extemely high rate of false negatives in lab tests - the unreliability of this particular test is well recognised by most doctors and in many countries they just treat on the basis of symptoms.
As far as CHlam on goes, I am pretty certain an X ray won't show anything. It doesn't really do much damage to your lungs compared to the harm it does the rest of your body.
This website gathers all the info and describes the three treatment protocols.
http://www.cpnhelp.org/

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Avatar_m_tn
28 years, I can't imagine how difficult that was. I've only had these symptoms for 6 and I'm thinking that a huge part of my life has been taken away. The worst thing is that everyone keeps telling me I'm totally fine, or that I have physiological issues that manifest as physical symptoms.

That article hit home, I didn't even think Lyme was possible in BC. First thing tomorrow going to the doctor to get the tests for both diseases.

I do indeed qualify for a lot of those Lyme symptoms, although some are difficult to say.

I'm going to see what the results from the tests are and go from there. Thank you again!
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Avatar_f_tn
Good luck with it.

Oh yeah, everyone tells you you're fine and it's psychologial etc... boy have I had a lot of that in my time!!

Make sure you get a printout of the full western blot results.
(you'll probably get an ELISA test too and that will be negative, it comes up positive only if you have it done exactly 6 weeks after being bitten by a tick).
With lyme tests you get "bands" that come up positive or negative, eg. I was positive in bands 39 and 41 and the others were negative. There are two schools of thought on what bands mean you have lyme, and some doctors don't seem to know either of them!

Here on Medhelp there is a very good lyme disease forum with a lot of patient expertise, so unless you are negative on every band I would post the results up there when you get them, to gather all the info you can.
Unfortunately, if you do have lyme disease you have to become your own advocate and your own doctor to a certain extent. It's like the thyroid illness situation times about 20!
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Avatar_m_tn
Well they convinced me  that it's not pneumonia because I don't have any lung issues and my throat swab tested negative...but I haven't heard back about my Lyme results. On my online lab page it says that the test is called "Lyme AB"  and that the results were send to a special lab. I guess I'm going to have to see my doctor again to get the results and try to interpret them myself.
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3164165_tn?1345337594
I live in the uk and could use some help please?
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Avatar_m_tn
We'll be glad to try.  How can we help you?
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Avatar_n_tn
From the past 3 years thyroid function was found in me.im taking the treatment by Neo-mercazole 5.In my last test T3 is 1.63,T4 is 12.18 and TSH bacame low  having the value of 0.02.i'm still taking the same medicine.will this medicine can cure to the normal range?
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Avatar_m_tn
Have a "summer" house in Berry Sud mid france. In 2006 or 7 noticed two small blood spots on my arm, soon after an expanding red ring. Later the area kept producing itchy dry skin, doc cut it out, lab said signs of insect bite. Started getting mid day fatigue, hot & cold sweats, spacing out, achy joints especially lower legs, freezing feet, achy bottom of feet, occurs roughly monthly,,. For 4/5 years continuously have white tongue, not cleared by mouthwash nor antibiotics, 99.8% loose bowels, no effect from ABs, probiotics. After reading an article in an expat mag from our area in france last year about Lyme, this is an endemic area. Now am sure have Lyme but GP is sending me to Gastro consultant. How can I get to see a Lyme specialist in UK
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Avatar_f_tn
please tell me how!
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Avatar_f_tn
please tell me how!
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Avatar_f_tn
I just went to the dr. today and they did blood work for this. I have all the same symptoms as you. I'm just afraid it will come back norm. I have had the once before. Dr. sent me home on depression pills.
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Avatar_m_tn
Just because your test results may fall into the so-called "normal" ranges does not mean that is adequate for you.  I won't get into all the reason why, but the ranges are far too broad to be functional for many people.  

If you will please get a copy of your test results and post them, along with their reference ranges, members will be glad to help interpret and advise further.  

What specific tests are going to be done for you?
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Avatar_f_tn
What was the final outcome? I have exactly the same symptoms, was told exactly the same thing about labs not testing T3/4 etc (although I called & asked the labs & they said it was complete rubbish!) I'm in eastern Ontario.
Dr said I have fibromyalgia, (which I know I don't have~I was a qualified nurse some years ago so I do have some insight & medical understanding) she prescribed me sleeping tablets which actually turned out to be anti depressants!
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649848_tn?1357751184
This is an old thread and most of the previous posters, including Gleb have not posted since this thread, so it's unlikely you will get a response.

Most of us don't believe there is such a thing as fibromyalgia... typically, those are the same symptoms as those of hypothyroidism and will go away with a therapeutic dose of thyroid replacement hormones.
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